Meeting Reports 2002

NIAMS Fibromyalgia Program Assessment

September 18-19, 2002 (historical)

Overview and Goals

On September 18-19, 2002, the NIAMS conducted an assessment
of the funded fibromyalgia (FM) research portfolio. Approximately 40 currently
funded investigators, additional scientists, representatives of patient advocacy
groups, and NIH staff participated. The purpose of the Fibromyalgia Program
Assessment was to provide NIAMS staff with information and expert recommendations
regarding the NIH-funded fibromyalgia research portfolio. The Assessment
was intended to provide an update on the current state of funded FM research,
identify common difficulties in conducting this research and suggest problem-solving
strategies, and identify gaps in the current portfolio and opportunities
and potential new directions for future research. Further, the process was
designed to enhance communication and promote collaboration among investigators,
invigorating research efforts aimed at understanding, treating, and preventing
this disorder.

Participants were provided with background materials to prepare
for the discussion. These materials included a list of all NIH-funded FM
grants for fiscal year 2001 and lists of NIH-funded grants in related areas
(i.e., chronic fatigue syndrome, sleep and fatigue, sleep and pain); abstracts
of the funded FM grants for fiscal year 2001; copies of relevant requests
for applications and program announcements since 1994; the summary of the
NIAMS-sponsored 1996 scientific workshop entitled,"The Neuroscience
and Endocrinology of FM;" and a PubMed bibliography of published FM
research from 2000-2002. Participants were asked to review these materials
prior to the Program Assessment and to be prepared to discuss the following
questions.

1. What are the major unanswered questions regarding the epidemiology,
etiology, course, and outcomes of fibromyalgia? Are grantees addressing these
questions adequately with current approaches?

2. Are appropriate approaches to prevention and treatment being
pursued with currently supported research? What are the gaps in the portfolios
with regard to intervention strategies?

3. If we could expand the FM portfolio, what types of research
would be the best investment? What new opportunities or technologies are
we missing? Conversely, if we had to focus the portfolio more narrowly, what
specific areas should have lower priority?

4. What methodological, technical, and logistic issues must
be addressed to allow FM research to move forward more smoothly and productively?
What are the major challenges to conducting FM research and how might these
challenges be minimized or overcome?

Structure and Process

The Program Assessment was divided into four major segments.
In the first segment, participants focused on scientific themes and issues
in FM research. These discussions highlighted the state of knowledge and
the contents and status of research activities conducted with NIH support
in the following topic areas: pain and pain processing; the HPA axis and
autonomic nervous system function; epidemiology, risks, psychosocial issues,
and overlap syndromes; and intervention research. Introductory comments by
a moderator for each topic were followed by brief commentary from several
researchers with expertise in the area, followed by general discussion.

The second segment was structured in the same manner, but with
a focus on methodological themes and issues: recruitment and retention of
study participants, control groups, and special populations; measurement
issues with regard to symptoms; brain imaging methodology; and basic research
and animal models. This discussion highlighted strengths and weaknesses of
current methods, identified obstacles to progress in research and discovery,
and explored problem-solving strategies participants may have used to surmount
difficulties.

In the third segment breakout groups, loosely organized around
the scientific themes from the first segment, focused on developing specific
responses to the questions listed above, informed by the preceding discussions
and review of materials summarizing the portfolio. Finally, the sense of
the breakout groups and identified challenges, opportunities, and needs were
presented and discussed in the full group.

Challenges in FM Research

The main challenges in conducting fibromyalgia research identified
by participants are listed below.

Uncertainty regarding appropriate diagnostic criteria

Confusion or inconsistency regarding study inclusion and
exclusion criteria and appropriate control groups

Confusion or inconsistency regarding appropriate outcome
measures

Lack of interdisciplinary fibromyalgia meetings

Variability in assessment of biological markers and limitations
in current measurement technologies and methods

Limited animal models

Recruitment and retention of study participants

Gaps in the Portfolio and/or Research Needs

This list reflects the participants' opinions regarding
the most important research needs in fibromyalgia given the current state
of knowledge and the existing NIH-funded portfolio.

Need to perform family association and twin studies that
will identify genetic and environmental contributions to abnormal pain
sensitivity or FM

The ideas for overcoming some of the challenges in conducting
FM research and specific suggestions for future research directions outlined
during the program assessment will be used by the NIAMS to identify program
priorities and plan future initiatives and in fibromyalgia.